Active discussions

Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Talk
News

See all MNHQ comments on this thread

Original poster

Issues raised by the CG case 11

999 replies

Venusflytwat · 17/07/2017 18:30

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
http://www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
http://www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
http://www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

OP posts:
Thread gallery
8
zeezeek · 17/07/2017 20:03

I asked my gdd what she thought (15) she said 'nan-pai, I value my brain, my brain is me. If I lost that what would be the point of living?'. So she has already set her own personal 'red line' on quality of life. We all set our red lines differently. That is yet another reason why this case is so hard.

Your Grand daughter is a very wise young lady Sostenueto. I think that many people would agree with that. For others, their red line is a body that is paralysed and unresponsive whilst the mind is active and trapped. Both seem like torture to me.

I do not, however, think that anyone, any adult, would wish to live in the world that Charlie is thought to inhabit. We would condemn and judge a family for keeping an elderly loved one in that state when there was an alternative - that of death. Death is not always a tragedy. Sometimes it is a relief.

MontyPythonsFlyingFuck · 17/07/2017 20:06

I agree with TinselTwins that the judge is unlikely to be moved by considerations of the CA backlash. He has made his name in the divorce courts, and by definition, if you are acting as counsel to one party in a divorce bitter enough to have reached court, you're going to be something of a hate figure to the other party. He won't be a stranger to animosity as a result of hearings. Which, in this case, is probably very useful.

LapinR0se · 17/07/2017 20:11

Re Connie's Facebook page - I should imagine she has literally hundreds if not thousands of messages from all kinds of people asking how the meeting went.
She has probably turned it off for a tiny moment of peace

TinselTwins · 17/07/2017 20:13

We would condemn and judge a family for keeping an elderly loved one in that state when there was an alternative - that of death

I think that's because to see an adult just lying there, eyes fixed on a point or closed, sh*tting in a nappy, not moving, not doing anything, is just unarguably wrong

But an unconscious baby just looks like a sleeping baby. They still in some ways look "normal", even if all they are doing is lying still and drooling. because babies do that

Charlie wouldn't stay looking like a normal (but swollen) sleeping baby if he lives, his joints/muscles will contort from lack of normal use, he'll drool and if he makes any noises at all they'll be odd. he'll out grow being able to look normal laid in bed with his blankies and his toys etc

At that point people would "Get it". But then again, once profoundly disabled children reach puberty and don't look like children anymore, less people care anyway. Sad

TinselTwins · 17/07/2017 20:15

I think this judge is probably also smart enough to get that the people who aim to "use" this case for religious or political gain, will do so whatever the outcome. Either way they'll twist it to "prove" their agendas, so there would be no point in tryint to avoid that

jinglejanglejobs · 17/07/2017 20:18

What happens to the court case if Charlie dies tonight?

I imagine that it could transition into a wrongful death lawsuit, with C+C saying that GOSH was wrong to not give Charlie nucleoside therapy.

Fingers crossed that he's not at that point. He and the family deserve a death that they can come to terms with, not one during this case when there's no conclusion.

TinselTwins · 17/07/2017 20:21

Fingers crossed that he's not at that point.
He could die any time, or stay ventilated for a long time
But just by being ventilated he's at high risk of sepsis via chest infection
Also if he's that swollen on the outside he'll also be swollen on the inside

Being ventilated doesn't mean you can't die! You can die while on a ventilator, and being ventilated has it's own risks.

Sostenueto · 17/07/2017 20:21

There were still posts on charlie cards fb yesterday 3.15pm.

Writerwannabe83 · 17/07/2017 20:22

Now they could get a yes, go over to the US, then be told that it's going to be a wait that Charlie can't physically manage.

And if that happens will he come back to GOSH? Are they obliged to take on his care again? I don't think I'd be too thrilled about that if I was them....

GabsAlot · 17/07/2017 20:24

i personally dont think thyd come back-the treatment may not work but thyre in such denial i think theyd just fight it until he passes naturally

TinselTwins · 17/07/2017 20:27

And if that happens will he come back to GOSH? Are they obliged to take on his care again? I don't think I'd be too thrilled about that if I was them….

I could be wrong but I THINK that PICU bed management is centralised. So if Charlie leaves GOSH and they become full he could end up in any available bed suitable for his condition, so he could go to GOSH or to Southampton or any of the others depending on availability and need. I think they try for nearer rather than farther, but you can end up anywhere with a suitable ICU level bed

TinselTwins · 17/07/2017 20:29

If charlie wasn't for active treatment if he came back ventilated from the US then he wouldn't necessarily "need" to be in the most specialised unit, he'ld just need a bed where they can manage a ventilated child right?

jinglejanglejobs · 17/07/2017 20:30

TinselTwins Of course you can die on a ventilator. But it's not wrong to hope that he doesn't suddenly pass tonight Hmm I imagine he's on quite a few things to keep him comfortable and decrease the risk where possible, and that the GOSH staff will be ready to put Sepsis Six in action at any time.

Ta1kinPeace · 17/07/2017 20:30

just bookmarking the thread to await some new news

and very pleased to hear on the last thread that lonelymummy's DD coped with her most recent treatment

Writerwannabe83 · 17/07/2017 20:33

If charlie wasn't for active treatment if he came back ventilated from the US then he wouldn't necessarily "need" to be in the most specialised unit, he'ld just need a bed where they can manage a ventilated child right?

True - the ward I work on are currently moving forwards to be able to care for ventilated patients and we certainly aren't a specialised hospital.

But if Charlie is sent back because he's no longer suitable for treatment would that not mean life support would be withdrawn anyway as per the original plan?

FlakeBook · 17/07/2017 20:34

So pleased to hear positive news of Lonelymummy's ballerina. Flowers

jinglejanglejobs · 17/07/2017 20:35

Charlie would end up back at GOSH. No other British hospital that GOSH has contacted have been willing to take him, I certainly don't think that they'll be willing when he's end of life.

FlakeBook · 17/07/2017 20:36

It's all speculation at the moment. I don't quite understand...is it inevitable that this drags on into next week to have a full hearing or is it possible that the judge could make a decision following tomorrow's meeting?

TinselTwins · 17/07/2017 20:37

jinglejanglejobs what are the Hmm s for?

EVERYBODY hopes he doesn't die tonight, he could though! Just by being swollen and ventillated that alone without knowing any details indicates lots of risks like heart failure and infections. I think that'ld be the VERY worst case scenario for Connie's mental health for him to die without this court case reaching a conclusion, without any sort of either confirmation or closure or anything. It would prolongue her "fight" and in turn make her grief stay in second place to her anger.

yolofish · 17/07/2017 20:37

I honestly believe that the best thing for Charlie would just be to pass away now, like immediately. All the implications of every other option are just awful: start treatment, not treat but continue to ventilate; move to US (die in transit?), stabilise in US and have to come back to UK when money runs out, continue the legal battle.... I couldn't do this to my child, maybe I'm weak, but without an acceptable quality of life for the INDIVIDUAL what point is there? (and I define acceptable as the ability to understand, communicate, enjoy and be as pain-free as possible)

TinselTwins · 17/07/2017 20:40

But if Charlie is sent back because he's no longer suitable for treatment would that not mean life support would be withdrawn anyway as per the original plan?

I would think not and here's why:
I think that the hospitals and staff that their "supporters" will have lined up stateside are highly likely to be Catholic hospitals. As such, they probably wouldn't want to be the ones to do the removal of the tube, even if it was the end of the line.
So the poor mite could be re-patriated "as is", then have his tube removed here (if he made it that long)

TinselTwins · 17/07/2017 20:41

I honestly believe that the best thing for Charlie would just be to pass away now, like immediately.

But if he arrested now, like tonight, with the court case pending re whether he's for life prolonging treatment, wouldn't they have to do painful/violent CPR on him?

I hope he is allowed to die, but not like that.

zeezeek · 17/07/2017 20:44

If he does die before it is all resolved then at least the parents don't have to go through another court case - but I guess they would forever wonder what if he lasted a few more days.

It's difficult, but if we just think about what is best for Charlie, then it is absolutely to pass away peacefully and quietly.

What is then best for the parents would be for them to be able to go away and just be together to grieve.

Somehow I can't see either scenario happening and I do worry how this is going to end.

TinselTwins · 17/07/2017 20:49

If he does die before it is all resolved then at least the parents don't have to go through another court case

Unfortunately I think that jinglejanglejobs is right about this, and without a conclusion to this case, Connie won't be "off the hook" re "fighting" for Charlie, even after he was gone. This case = closure one way or another and without its conclusion there'd be potentially years of lawsuits

LovelyBath77 · 17/07/2017 20:49

Someone on CA is saying Hirano is going to carry out 'two says of tests' so maybe he will ask for scans. I believe he is only here for a day or so, though.